Stem Cell Transplant... Six Months Out.

This morning I walked west bound on Beacon Street for about a mile and then back to my apartment, (just two miles from Fenway Park). Beacon Street is lined with old but well kept, three and four story brownstones interrupted at random intervals by contemporary, concrete gray apartment buildings. Shrubs and flower beds form a border between the buildings and the sidewalk. While walking today I noticed white and purple crocuses pushing through the dirt, rhododendron buds swollen with purpose amidst shiny green leaves and a sprouting tree here and there. Not many years ago I would jog this same route to clear my head of work stress, oblivious to spring's nascent beauty along the way.

I completed an auto stem cell transplant this past September. 'Auto' is short for autologous and, as my friends on this path know, refers to a transplant of one's own pre-harvested blood. An allogenic transplant uses a donor's blood. On day one, I reported to a procedure prep area and an hour later a port for drug delivery had been painlessly inserted, high on the right side of my chest. Next, I was delivered to a bed in the sterile enclosure of the stem cell transplant area, and placed in the care of a  bright, intense team of specialized nurses.

At each point of my three week stay the nurses prepped me for what was to come, describing in detail how a procedure would be done, why it was being done and how it would effect me.  Melphalan was administered on days two and three and on day four, my bright red stem cells were returned to my body and went to work.

Knowing that melphalan rages on myeloma cells made the discomfort, (some nausea and diarrhea), easier to put up with. I followed the advice of my nurses; by chewing ice chips during the chemo infusion and using a prescribed mouth wash as scheduled I minimized mouth sores. Just getting out of bed and walking the floor around the nurses station, strengthened me enough to win my release a day or so earlier than planned. Adhering to a few simple guidelines like hand washing, avoiding raw foods and germ laden environments like supermarkets for the first three months, I remained free of colds and flu.

Having a caregiver for the first week or two at home is important. I wanted to avoid burdening my son and daughter, (both in their early twenties), during recovery. Brushing aside my concerns they took charge, coordinating visits and preparing a sterile and functional environment at home ahead of my discharge. Once home they sent updates to family, worked out a transportation schedule for follow up appointments, shopped for groceries and cooked my meals. I think they spoiled me.

Once the decision is made to undergo an SCT it helps to be aggressively positive from the start. Focus on the results you are hoping for and rely on your nurses who have cared for hundreds of transplant patients before you. I thought of the many who had preceded me, some with more than one SCT, and I knew I'd get through OK.

My desk faces three large windows that line the wall of my apartment on the backside of the building. With my morning coffee I look out beyond the resident parking area to a sparsely wooded section that rises sharply to a neighborhood of old, wood frame, Victorian houses set on the highest elevation in the town. A huge red brick and field stone retaining wall, 50 feet high by 200 feet wide, built in the early 1900s, supports the high ground. A pair of cardinals, the male a bright red streak chases the female, camouflaged in a subdued maroon splotched with brown and grey,  collect material to build their nest. They have been a special presence during the three years I've lived here and it's good to have them back as spring arrives.

Myeloma, Revlimid, Velcade, Dexamethasone... A Rambling Thread

On June 19, I returned to the Dana Farber to begin the first of several chemo cycles which will culminate in a stem cell transplant in early September. The initial cycle of four treatments on consecutive Tuesdays and Fridays, consisted of Velcade and Dexamethasone. Last week was treatment free. Today Tuesday, July 10, begins the next four part cycle with Revlimid added to the Velcade and Dexamethasone.

As I resigned from my work effective June 29, anxiety struck and I  had a sense of how Wylie Coyote must feel in that instant of clarity, right after chasing the Road Runner off the edge of a cliff . Seemed like a good idea in the moment, though the ramifications are significant and decisions need to be made fast!

At sixty-three I was prepared for everything but continued health care coverage. Not that I had ignored it, but the fact remains unless one is a retiring CEO of a major US bank,  or a congressperson, (even a one term congressperson), when one's job ends it's difficult to avoid joining the ranks of Americans without health care. The choices available are expensive and fraught with limiting covenants, like preexisting conditions, that classify many of us as ineligible to join a new health care plan.

It was once considered a patriotic investment to enable affordable health care and education for the American people. Today more than 50 million citizens live without health insurance and more than 50% of college seniors will graduate with an average student loan debt of $25000. Before 1980, the amount of student debt was negligible in comparison.

In terms of the treatment I was struck by the level of fatigue that follows about an hour after the Velcade 'push', while the Dexamethasone kicks in with a wired, edgy effect disrupting sleep on the first night. However, I'm not complaining. Granted, I have completed just four sessions in the first of many cycles, but a light, splotchy rash on my back and chest is the only other side effect thus far.

On each visit an hour before the drugs can be administered, for those new to the process, blood is drawn and analyzed to be sure various markers - creatinine, protein, liver function -  are strong enough to handle the treatment. During the last appointment my Infusion Nurse, Mary, scanned the preliminary blood work and told me I was a "problem drinker" and hooked me up to a bag of electrolytes. As I don't drink alcohol, the label referred to my lack of daily fluid intake resulting in a slightly inflated creatinine, a measure of kidney function. One of the reasons I don't drink enough water is that at sixty-three the frequent need for a men's room when out and about can be inconvenient. Thus, I consciously watch how much I drink if venturing from home. Mary strongly advised that the inconvenience of possible dialysis is far more significant.

Boston is a beautiful city almost year round and this summer will rank among the most glorious of my lifetime. Hundreds of small sailboats skip across the rippling currents of the Charles River, the sun's squint inducing reflections flash from the bleached white sails which snap, and turn, subservient to the wind currents. Half push toward the northern banks of the university dense Cambridge shoreline; the rest cut back, heading for the concentration of Boston's skyscrapers, separated from the southern bank of the river by the narrow gardens, lagoons and bike paths of Boston's Emerald Necklace. Carson Beach, twenty minutes by trolley or a forty-five minute walk form the Charles, is packed with families and singles of all ages basking in the sun or clustered neck deep in threes and fours, in the unusually warmed Atlantic Ocean off the South Boston shoreline.

The tough 'Southie' kids keep it in check because of the many children scattered across the sand. They're not bullies for the most part so it's relatively trouble free during the day. Of course if you go there looking for trouble, you'll find it before your second step splashes sand into your flip flops. Surrounded by working class neighborhoods there is a disproportionate representation of combat veterans, recently returned from a second or third tour in Iraq or Afghanistan. A few years ago they were the tough 'Southie' kids but now, sitting on blankets or beach chairs, they stare out to the vast expanse of the sea, and the hope of a life force strong enough to help, for the moment at least, ease the pain of the harrowing ferocity of combat. They tend to keep to themselves and most give them space.

I can't help thinking of Paula Kilgallon every day. The way Paula lived defines, for me at least, how precious this life is and how little time we have to taste and feel and discover the tantalizing gifts hidden in the moments we let pass by. I apologize if this sounds like I'm trying to preach, as if I have answers to the obvious questions. I have no solutions or strategies that might open hearts to a level of awareness that is, frankly, much higher than that which I possess. The truth is, as I read this back, I am talking to myself from start to finish.

Multiple Myeloma -Truth Finder Guide

As a newly diagnosed patient in January of 2003 I spent too many hours searching for unvarnished descriptions of what Multiple Myeloma was going to do to me, immediately and long term. The difficulty was in learning the questions to ask. Eventually I was led to a Blogger network of patients and caregivers who write frank, unequivocal accounts of becoming the aggressor, not the victim, in this struggle. I've listed MM Bloggers which I have come to rely on categorized by the type of information, data, or story the Blogger presents. All of the Bloggers are patients, caregivers and occasionally an oncology professional, and many offer links to additional useful sites. But this is a sample of the those I've come to rely on for information, support and for a good laugh now and then.

COMPILATIONS:

The Myeloma Beacon: Daily scientific and drug therapy news; Timely publication of Blogs by other patients: A forum to voice common questions and concerns; reporting by patient staff writers.

Multiple Myeloma Blog: Written by Pat Killingsworth, author and MM patient.  Pat single-handedly covers and reports on the major MM national conferences; debates treatment concerns such as the efficacy of stem cell transplants; candidly discusses his personal treatment in detail; offers relevant books and articles through an online store.

FAMILIES:

Multiple Myeloma For Dummies: The story of Phil Brabb, a former collegiate athlete diagnosed at 28, and his lovely, determined wife Cassie. This blog crosses categories but gives an honest appraisal of the complexities of raising three small children, maintaining a household and a sense of family normalcy, during Phil's aggressive treatment. Phil and Cassie recorded his stem cell transplant, stage by stage, producing a candid portrayal of the emotional and physical toll exacted by this procedure. Cassie has a related blog called, "Spilled Milk" which is specifically dedicated to family concerns through the eyes of a busy 'caregiver' Mom.

Roobeedoo: By a lively, witty and creative woman, the ongoing saga of Roo, set among bucolic Scottish farm country, where she is the 'caregiver' of her husband, FL (First Love). Despite work, seeing to the needs of her two young adult children, and supporting FL's MM challenges, Roo finds time to knit and sew and model her creations. Roo manages to consistently blog all of it, the highs, the lows, the hard work and the challenge of keeping all aspects of family life together.


Walking With Big Easy: Authored by his wife, Linda, as four generations of this grand family support EZ in his stand against MM. Abounds with positive energy, and lasting family connection built on the solid foundation of EZ and Linda's commitment.  A story of the reality of Multiple Myeloma within a philosophy that life goes on with "great vigor", (to quote JFK's inaugural address).



EXERCISE:

The Adventures of Cancer Girl: A young Mom struck with MM at 37 who is now training for half marathons with her husband Jay, sponsoring parties for her seven year old TWK, The World's Greatest Kid, and following every (creaking) move of an ageless, (in her mind), still talented Bon Jovi.



Myeloma Hope: Don has been standing toe to toe with MM for nine years with the dedicated support of his family. Don is a long distance runner who is working toward his goal of running a marathon in every state, while being treated for MM. In addition to explaining scientific findings on up and coming MM drugs on trial, Don offers delicious menus containing cancer fighting food types cleverly integrated into the menu. After trying a couple of his dishes it occurred to me that a marathoner's fuel needs might be necessary to offset the calories. Or, I could limit myself to a single serving.


SPECIAL ATTRIBUTES:

Sander's Blog in English: A Dutchman who matter-of-factly relates his daily contest with the pain and symptoms of active MM. Hope is that the "Dark" days are behind him.

LITERATURE:

Retired for Good: Connected to the MM community through a family member patient, initially, Sandy's Blog remains relevant to the MM experience while taking us on a brilliantly written and colorful travelogue. A brave woman whose travels allow me to learn about and enjoy places I would hesitate to visit.

Riding The Wave - Multiple Myeloma: Beautifully written by 'care giver' Lori Puente, at once poignant, inspirational and informed. Worth a visit every day for the unpredictable experience of Lori's words of encouragement, remembrances, and treatment information.


A reader sampling some of the above blogs will sort out those of particular value, and find links to others I have not mentioned of helpful perspectives. The opportunities to express feelings of worry, anxiety even panic, about a MM diagnosis are myriad, by commenting on a Blogger's post or starting a Blog of one's own.

Elizabeth, an artist and former 'caregiver', who lost her husband two years ago to MM, has a significant impact in the community through her comments on MM Blog posts, and introduced me to several of those I follow. When asked why she continues to  devote so much time to this work she responds that she speaks from her experience of the pain from beginning to end. She adds that as long as she can help with her words, she does not wish to give up her place. I hope to enjoy her continued support for years to come.

We recently lost Paula Kilgallon, author of "Feresknit'sblog" and in my opinion the strongest, most brilliant Blogger I have read.  It is painfully sad that Paula has left her husband, Bernard, her puppy, Buddy, and all of us. Writing this I realize she lives on in our hearts. I return to her Blogger posts every day to rekindle the inspiration her words gave to me.

Blessings

Multiple Myeloma Diagnosis... What's Next?

The multiple myeloma blog world we share is a reliable community of patients and caregivers who remember the moment the earth was drained of color upon hearing the words, "You have cancer."Every day new members enter our community, afraid, lost and unsure of what to do next.

Starting treatment in 2003, I remember thinking, "I have cancer coursing through my blood and I'm supposed to sit back and wait for the next appointment?" It gave me the creeps and I wanted action, every day,  to stop the mutant cells from establishing a foothold in my body. The wide ranging experience described by the narratives of patient and caregiver bloggers helped set expectations.

Diagnosed in January of 2003 and following aggressive treatment after each of three relapses, my stem cells were harvested in early 2009.  The disease seemed to drop to a smoldering level in reaction to the pre-harvest chemo, so the team decided to delay the transplant and continue monthly Zometa infusion while watching for plasma cell activity.

Over the last several months my kappa light chains have trended higher. At the same time I've been feeling more rib and back pain. A PT-scan on June 5 revealed new lesions, one on the right scapula the locus of intense pain.

During an appointment with 'my' oncologists, Dr. Robert Schlossman and NP Kim Noonan, at the Dana Farber on Thursday, the 14th, we discussed resumption of treatment using cycles of *RVD and a potential stem cell transplant in late August, early September. I had become skeptical of  the transplant process but after a thorough discussion of the alternatives with Dr. Schlossman, an *autologous procedure makes sense to me.

Moving into this next phase of mm treatment, I'll try to be consistent with updates in the hope my experience proves helpful.  MM has been a daily factor in my life for over nine years at this point and, though a roller coaster ride at times, I've been able to enjoy long stretches of virtually treatment free time with my family, friends and work mates. I intend to continue in much the same way.

*RVD = Revlimed + Velcade + Dexamethasone
*Autologous = Using the patient's stem cells as opposed to a donor's cells.

PAULA KILGALLON

My guess is that God had a mission for Paula, and the mission was us. Like an apprentice Guardian Angel she was imbued with a positively charged energy which she cast like lightning bolts when confronting tangles of doubt and cynicism. Paula engaged life with tenacious optimism and an eagerness, bordering on impatience, to get on with it.

Paula had many talents but her gift was as a story teller weaving together the fun and drama of her life with Bernard, Auntie Ann and Buddy amid piles of brightly colored yarns. At the same time, she never allowed multiple myeloma to lurk in the shadows. Rather, she exposed its painful complexities to the benefit of all who wonder, "What's next?"

Gathered in a volume it is the story of a beautiful, courageous woman who lived life rich with the flavor and color of a world, yet rarefied by her presence. For balance God placed Bernard next to Paula, the quiet rock against whom she leaned when the fatigue of long endured pain became heavy for one to bear.

We struggle to understand why God would take one who had been a consistent source of hope. A message, possibly, that we have been fortified enough. A signal that we are to share Paula's gifts with others who tire of life because of illness, the pain of cruelty or the emptiness of being alone.

I, for one, will miss knowing Paula through her illuminating skill with words and her ability to create lightness in the midst of  thick, weighty darkness. I will miss the sense of humor which flowed from the core of her being and endured through her final post.

I hold all that of Paula in my heart's memory. And I imagine at this moment, Guardian Angels scrambling on Heaven's missions to the frigid reaches of the universe, smiling in the new found warmth of Paula's heavy knit sweaters.

Peace and Blessings, Bernard, and my heart felt sorrow for the wonder you have lost.

POETRY SLAM!

The quests of youth changed nothing,

I know what I’m about.

Parts I like, a voice to hide,

Burdens of old doubt.

Roots of remorse entangle each step,

Choked on abandonment’s ashes.

Spent, clouded eyes at midnight’s black bars,

Relume at egos colliding.

Inching higher, reaching, depleted I fall,

Buffeted dry seed in the wind. 

Hubris exposed, a vapid facade,

Desperate I reach for the One.

A God of Hope is what I hope,

Worn soul of gossamer thread.

Purgacious falls, frigid pools of his grace,

Relief from the moment’s grey dread.

Dreams of my children, sleep’s border guard,

Disappointment, confusion my gifts;

Yet uncontained laughter, as we wrest cross the floor,

Enfolds me in their love.

'Don't Cry for Me, Myeloma!'

The challenge to resist victim-hood is faced by all of us with cancer. Falling prey to such emotion leads to self pity and dissolves the spirit needed to effectively fight this disease.

Cancer arrives with a crew, of hopes, fears and powerfully independent emotions. A fellow patient, a new friend, recently told me the story of his original diagnosis and its impact on his personality. His self portrait seems unlike the man I know today, but he assures me it's accurate, an image he checks himself against each day:

He was jealous of the attention bestowed on another patient. The other guy, also fighting cancer, seemed to be there each time he visited the Dana Farber for treatment. He was young as well, but needed a wheelchair at times, the result of the disease and the trauma of a heavy chemo load.

My friend, John, had it in his head that the nurses and doctors had less concern for him than for the young guy in the wheelchair, whom we'll call Patrick. One day sitting in the Dana Farber waiting area, John was particularly miserable.

His wife, grown weary of his attitude, confronted him. "Are you in such pain, has something happened to cause you to be so depressed?"

He became silent refusing to answer. She told him she had been watching his reaction to Patrick and demanded to know why the 'poor guy' was getting under his skin?

'The poor guy!' he snapped. 'Why is he such a poor guy? I have cancer and nobody is fawning over me."

She was shocked. For the first time the depths of his self pity were clear and she realized the darkness he was forming around his soul.

'John,' she said quietly, gathering her things, 'the difference between you two is that Patrick is squeezing every last drop out of life in the time he has left while you're looking for people to feel sorry for you.'

She stood up reached into her purse and flipped the car keys which he caught mid air, an inch from the end of his nose.

'You take the car,' she said. 'I'll grab a taxi and go to work before I lose my job because I'm spending time babysitting you.'

He was stunned and embarrassed and allowed the jangling keys to fall to his lap. He tried to ignore those sitting around him in the waiting room as they shuffled newspapers or looked at the floor. Finally, he pushed himself from the seat and walked out through the automatic door to the parking circle and breathed some real, unfiltered air.

It was a busy clinic day with a bustle of hurried nurses and doctors, people dressed in suits who had an, 'I'm in charge' look on their faces, and patients whose sallow skin and degree of hair loss described the intensity of the treatment they endured. Some were happily engaged in animated conversations with friends or loved ones. Others shuffled along, insolently self absorbed and familiarly alone.

 The sun was hot. His first thought was to find some shade before perspiration wilted the creases of his crisp white shirt, which he would find most annoying. He looked about for some form of protection just as a light, cooling breeze wafted gently against his face to produce a pleasant sensation on his skin. He stopped looking for shade.

He sat on the back of a wrought iron bench and after a moment, closed his eyes and turned his face skyward.  Something caused him to simply let go and he felt the universe open. He had a brief  sensation of being drawn toward the vastness of space, out of the smothering isolation of his life. He saw the insignificance of himself, but also his importance as part of the constituency of the living, integrated into the fiber of  every other.

And just as suddenly he was back. He still had cancer, the pain, the fear;  but the sun was bright, the breeze was cool and his shirt looked good.

"I'll stay out here for a bit longer," he thought.

Zometa Curtailed

Lifting weights might sound boring and feel too much like work in the early stages. However, with a disciplined schedule, using appropriate exercises and techniques, the duration of a workout can be shortened. The results in strength and improved muscle tone are rewarding but the positive effect on bone density is a critical benefit for those living with multiple myeloma.

I began a month ago with the advice of oncology professionals at the Dana Farber Cancer Institute in Boston, who have treated my multiple myeloma for nearly ten years. In a recent post I mentioned that Dr. Robert Schlossman had reduced the frequency of a Zometa infusion from once every 30 days to a 60 day interval. Reducing exposure allows me to continue to benefit from Zometa while lessening  the probability of complications. Certain exercise complements the bone strengthening effect of Zometa.

 Nurse Katie Murphy advised me that walking, fast and with more arm involvement, produces impact, and thus promotes bone density in the legs, hips and back. For the upper skeletal region, the arms, shoulders, chest and ribs, she recommended a routine using light, handheld weights.  I work toward completing five sets of my routine. Each set consists of five discrete exercises and I try to perform six repetitions of each individual exercise in the set. So my routine, with a 15 lb. dumb bell  in each hand, follows:

1) Shoulder or 'military' press: (the entire five exercise set is done standing), six reps (repetitions) and return weights to the rest position at your sides.

2) Side Flies: From the rest position, six reps, extending arms, elbows locked to the sides and up until parallel with the ground.

3) Forward Flies: With one foot slightly ahead of the other, from the resting position, six reps, extend the weights forward and up with elbows locked, until hands are at about eye level. Return to rest position.

4) Upright rowing: Six reps, lifting along the line of the upper torso until the weights come together beneath the chin.

5) Shoulder roll: Six reps with the elbows bent and weights held to center chest. While keeping elbows tight to the ribs, roll the weights out and away to the side as far as is comfortable, then return weights to the  center of the chest, forearms parallel to the ground throughout.

The key is to move from one exercise directly to the next. After completing the first set, take a couple of breaths and begin again almost immediately. When you are able to do five complete sets, 150 total reps without stopping, move up in weight.

Out of concern for my technique a friend recommended a long running PBS exercise program called "Body Electric", which I found on line. Its Founder, Margaret Richard, leads viewers through a series of exercises using light weights and strict adherence to proper form. This avoids injury and optimizes the effect of the workout. I procured the latest dvd, and although Ms. Richard claims to be my age, (she appears to be much younger), I have to admit, I was unable to match her endurance and strength as I began the program.

Though I'm not able to work out as hard as I used to, I feel better doing what I can. As important, I feel a sense of satisfaction, flying in the face of this beast we call multiple myeloma.

Uncertain, We Are...

The 'Roobeedoo Blog' of two or three days ago, included the photo of a Lady and a hand-knit wool wrap recently completed.  In the picture, she is enfolded securely against the cold surrounded by vast, hibernating farmlands.

The vista would be desolate were it not for the expectation of the bright colors of new life, sure to burst through the earth with the near-by arrival of spring. If I could stand in her spot I would release my churning mind to the far reaches of the visible heavens to be diluted in the atmosphere of an unending sky.

Through the window by my desk I look down on city traffic and people rushing to catch passing trolley cars. However, when the wind is right, I taste salt in the air and imagine the bone chilling cold of the Atlantic Ocean two miles to the East. I envision the stretch of sand where I stand from time to time at the gate of life's essence, wanting to know the significance of this single, minute, particle of a soul.

Patients and care givers alike, endure an intense uncertainty. The latter bear an added layer, more profound, traumatic and unnerving, I think, for the looming prospect of moving forward alone.

"No matter where my life takes me in the future this will be my farm shawl," said the Lady, acknowledging commitments made and kept, and the constancy of her own construction.

The warmth of the wool honors its place in the moment and carries forward the luminous dust of indelible dreams.

"I'll Be Back"

 My oncologist just reduced the frequency of my Zometa infusion to every sixty days from a thirty day interval.  The drug has served me well for almost ten years. We think that the change will continue to protect bone mass while avoiding potential side effects.

I've been pondering ways to supplement the reduced Zometa dosage.  There is, fortunately, a plethora of dietary and nutritional material offering a broad range of foods,  (frequently accompanied by savory recipes), and natural supplements to be considered with the counsel of one's oncology team. My infusion nurse suggested weight lifting and light impact workouts that meet my conditional limitations.

I have trained for and participated in long duration, 100 to 200 mile, bike events over the last ten years or so. However, as many of you know, biking, (like swimming), while great for overall health has limited effect on the bones because of the low impact nature of the exercise. A consistent jogging or fast walking routine would strengthen leg bones, my nurse explained, while light, weight training for the arms, shoulders and chest would help add density to the upper skeletal structure. Weight bearing and impact exercise adds bone density.

Obviously, changes to your daily regimen should be discussed with your oncology team. The doctors and nurses of the Dana Farber in Boston have considered and evaluated  nutrition, nutritional supplements and exercise routines that are touted as beneficial in the treatment of multiple myeloma. More important, they know how one patient's response, i.e. my response,  differs from others to a drug, a particular dosage of a drug, the level of exercise intensity your physiology can manage,  and even how much weight your bones can bear without causing damage. For example, my doctor suggested I should lift not more than 35 pounds. That sounded light to me until I was introduced to a program using light weights, a high repetition count and a unique combination of exercises.

I'll let you know how I feel after a couple of sessions. In the meantime if you body builders out there have any ideas, I'd like to hear them.

Thanks for checking in...

Inspiration that fuels my love of life, despite the peaks and valleys, has many sources. Martin Luther King's fearless frontal attack on the evil he knew would kill him in the end. 'Doctors and Nurses without Borders' forcing entry to places where evil men with guns threaten worse than death. Paula's (Feresaknits Blog) unwavering acceptance of the torturous effects of the harsh chemotherapy warring against her myeloma. And I have to admit, Tom Brady leading the Pats onto the field each Sunday is a charge.


When you sum it up, it has all to do with one's attitude toward life. You can face it scared. Or, choose to rise up, rushing headlong into the maw of the adventure, absorbing numbing  loss and newfound love. Then stand whenever possible to finish your day beneath the sparkled radiance of  tiny stars splashed against the immensity of a  black, ocean sky.


One of my favorite quotes says it best:


“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!”
― Hunter S. Thompson

Stephen

Results, Ramblings and God

I received the results from last Friday's blood work. My Kappa Light Chains dropped from 140 to 120 and the bilirubin fell to 1.0 from 1.70. Good news, particularly as the improvement occurred without treatment, other than a Zometa infusion.

The severity of multiple myeloma is mysteriously random from one patient to the next . Since being diagnosed ten years ago, there have been five or six difficult periods where the beast has interrupted my life. I have  recovered from each and returned to a relatively normal schedule because;

A) The Oncology Team at the Dana Farber has been spot on with their treatment.
B) The strain of multiple myeloma attacking my body goes into hiding after chemo.

Easy enough explanation, but not satisfying in the end because the questions remain; why do I have an easier time than so many others? More pointedly, why an easier time than the young people in the same fight? It may be that there are no answers but I'm tired of hearing, 'we must trust in God's mysterious ways.'

My concept of God continues to evolve but I believe He or She is smart enough to teach us a lesson, any lesson, without need of a young cancer victim as the mechanism. I do not believe He causes anyone to become sick or to be the victim of misfortune. God, perhaps, started the clock and gifted us a conscience and free will, then stepped back to watch how we would treat one another. Despite my current stance, however, I find myself speaking with God and the tone recently has become contentious if not heated at times. Although I believe He doesn't cause sickness I'm certain that He has power enough to stop it. Maybe just for the younger folks?

Religions, in my opinion, are exclusive clubs. They are made so by the requirement of obedience to leaders who have as their objective, domination over all other religions. A personal relationship with one's God is anathema within the rigid confines of institutional religion. Outside those boundaries it is the source of freedom, relief, and appreciation for the gift of life, as it might be lived in shared exuberance with folks we love.

If I could codify God's boundaries for me it would contain these four elements;

Be good to others, always.
Be kind to yourself.
Look for the beauty in each moment of existence.
Avoid the dark evil of despair.

God has no tolerance for despair. When I have felt the insidious creep of depression, due to the roller coaster ride of multiple myeloma for example, God reaches out to me. As long as I take His hand and allow His strength to hold me above the surface, we're good.

If I ignore Him in this, his anger is palpable, a searing intensity that focuses my attention. It is up to me to reach, and He will  pull me back from the hell of hopelessness. His miraculous gift is this life continued, with the beauty, love and pain it holds in store for me.

I  confront God with my anger that he allows children to suffer from disease, famine or the fire of exploding bombs, He laughs, and turns it back on me.

'It is not my doing,' he seems to say. 'You are the key variable in the most basic equation.'

 'Would you give away all you possess to save one tiny life?', he asks me.

'Will you leave the comfort of your home and family to care for the million babies, starving to death in their mothers' arms in the desserts of the Sudan?'

'Are you intending to go to those places where bombs rain down, to hold frightened children when there is no place to be safe?'

'You alone can be a force to save tens, hundreds possibly thousands from the pain you blame me for... Will you help?'

 I know the answers to His blunt, fundamental questioning of the depth of my convictions. I've calculated the cost of the truth. Thus I say nothing and remain silent as time ticks away and I settle into the corner of the darkness surrounding me.

Soon, He is silent as well.

The Dog Ate My Homework...

Multiple Myeloma patients contribute some heady commentary full of intimidating statistics, analysis and the implications of various FDA drug trials. At times I feel like I'm sitting in science class without having completed my homework assignment.

My next clinic visit is Friday, January 20th, at the Dana Farber Cancer Institute here in Boston. (You may have heard of Boston as the home of Mr. Thomas Brady, the greatest quarterback in NFL history.) The oncology team at the Dana Farber is one of the nation's top teams in the battle against cancer.

My treatment over the past 10 years has been successful and it might be that I've taken the good work of my doctors and nurses for granted. They have taken me through a couple of rough spots and have found a balance between aggressively confronting the myeloma versus backing off when it seemed my immune system could do the work. Recently, my numbers have jumped a bit and I'm looking forward to Friday to see what the blood work and exam reveal.

I was last treated with revlimid in 2009 and have been in relatively good health with a zometa infusion every other month.

Trying to catch up with the class, I went back and reviewed what I think are important numbers. I have the kappa light chain version of mm and looked at those stats first:

  Date                                       kappa light chains range       (19.4mg/l is top of normal range)
Aug. 2010 to July 2011               80 to 85mg/l
Aug. 2011 to Nov 2011               100 to 106mg/l
Dec. 2011                                          140mg/l

In mid 2007, kappa light chains peaked at about 300 mg/l.

The Kappa/Lambda ratio registered at 29.412 in December 2011, vs 1.65 normal value.

Bilirubin December 2011 registered at 1.7 vs normal of 1.2 (not clear on the significance), so a touch high.

My creatinine is always 1.4 vs 1.3 normal, but the consistency of the value probably means I just don't drink enough water.

In general I feel a bit more fatigued than usual but I've avoided serious colds, bronchial infections and such, because the nurses attack like Seal Team Six at the first sign of a cough, rise in temperature, etc.

If you think I'm missing something, if there are more data points that I should be looking at, please feel free to advise. Thanks for checking in.

Multiple Myeloma Missive: I Got Three Quarters of the way there... Did I?

Multiple Myeloma Missive: I Got Three Quarters of the way there... Did I?

I Got Three Quarters of the way there... Did I?

I was watching a Biffy Clyro music video, the Scottish band, performing 'Bubbles', working to the limit of exertion. Through instrument and voice they produced a sound so powerful it was lifting the thousands of young people in Wembley stadium to a level of exuberance that cannot be duplicated by anything artificial, substance or otherwise.

Thoughts of what I had done in my life, with my life, ran through my head as I watched these guys who have been for years intensely committed to their music, determined to reach the top of their world. Had I worked as hard what adventurous goals might I have attained? If I had followed my heartfelt passion could my life have been as full for just one, single night? Did I get three quarters of the way there? Half way?

My friend Paula comes to mind each time I watch the video. I picture her and her husband Bernard in the midst of the crowd singing the words, which of course Paula would know by heart, and dancing with the exploding lightness and overflowing joy that best defines youth in all its blazing glory. I think Paula would be a featured audience member if caught on video at a Biffy Clyro concert, in the midst of the mob, spinning wildly astride her Bernard's shoulders!

Unfortunately, Paula's tied up right now fighting off the effects of multiple myeloma, one of God's most predacious diseases.

Paula is one who fills each moment of the day with creativity. She knits clothing for everyone in her neighborhood and little yarn creatures for the children. She paints her house, has a garden and makes her own Christmas cards. She is a brilliant dog trainer and photographer. Above all, though, she is a writer, a genuine author, exploring the joy that can exist even at the dangerous edge of life, something we fellow mm travelers understand better by reading Paula's work.

I check into Paula's blog daily because she makes me laugh and I always learn from the wisdom she generously shares with her readers at "Feresaknits Blog". I'm praying that she soon vanquishes the marauding cells attacking her body and achieves complete remission. I hope she does so in time to attend the next Biffy Clyro concert which is planned for June 23 on the Isle of Wight. If so, the tickets will be on me. I might finally meet Paula and Bernard there in person... Why not!!!

'An Angry Man'

The receptionist at the front desk welcomed me to the Department of Urology and apologized that the Doctor was running 15 minutes late. I took a seat among the six or seven others in the waiting room.

My visit to 'Urology' was a follow-up to a recent exam, and was to include a scope procedure for a closer look at my prostate. I was, understandably I think, less than eager to have a scope inserted into my body through a catheter but I had arrived in the office at 9:15 a.m. as requested, 15 minutes ahead of the scheduled procedure. A nurse took my vitals and asked me to return to the waiting room until the urologist arrived.

I picked up a sports magazine and began reading a piece that seemed to be lobbying for Stanford's young  quarterback to win the Heisman Trophy for the 2011 season. I was distracted by thoughts of the catheterizing process but noted the 22 year old football player's list of personal goals like improving his completion rating, winning the Heisman and leading Stanford to the 2011 national championship.

Looking up from the magazine, I thought of making a second trip to the bathroom. I had skipped my morning coffee to avoid having to 'go' during the procedure which I would have found embarrassing.

A second receptionist popped up from her desk behind the horseshoe shaped counter shouting my name like we were in an auditorium. I stood and walked to the counter noting by my watch that I had been there for about thirty minutes.

I was annoyed at the delay, which was unusual for me. I was annoyed that I had paid $13 for a taxi instead of walking to be on time for the appointment. I was annoyed (unfairly I know) at the youthful ebullience of a 22 year old quarterback planning his triumphal life. Mostly, I was annoyed to find myself waiting for another procedure, the results of which might suggest a panoply of dignity crushing events.

Like others with multiple myeloma, certain treatments had weakened me but I fought back each time and regained my strength. I realized that if the 'scope' procedure found prostate cancer all treatment options were radical and the effect would compromise my notion of manhood. I decided that I would decline any new treatment.

I stood at the end of the counter while the receptionist faced the room calling variations of my name; "Steve, Stephen, Mr., ah..." All the while the people in the waiting room pointed to me standing six feet to her left.

"I'm here," I said, which gave her a start and she hopped back a step while turning towards me. I got the sense that she was tense, like Lucy Arnez futilely struggling with chocolates moving too fast along a conveyer belt.

"Are you Stephen," she asked?

'I am,' I answered.

'OK, well the doctor is still tied up and will be for about 15 minutes, so why don't you take a seat and…'

'No,' I said.

She looked up, a bit taken back and asked, "What do you mean?" A big nurse in the background whispered too loudly that she should, 'tell him to sit down and wait!'

 I explained that I understood the doctor was busy but a second delay would make me late for another appointment.

She picked up the telephone, finger hovering above the keypad and said, "Tell me who the other doctor is, I'll explain you'll be late and it will be …"

"No," I said, 'I don't have an appointment with another doctor... I have a business meeting and I'm leaving now. I'll call to make another appointment'.

"OK," she said, and a murmuring huddle formed as the receptionist was scolded by the big nurse for letting a patient get away.

I left the building and decided to walk part of the way home. My favorite route took me by a little, red brick school, its window sashes painted in bright red and gold. The school sat next to a park the size of a city block where Moms and Dads helped little ones on the swings and the slide. A cold wind tried to find its way through my skin and around my ribs looking for my pounding heart though the rush of air felt good on my face.

My pace quickened as I passed the leaf strewn park to my right, and on my left, across the narrow street, old Victorian houses that had been broken up and sold as condominiums. A slow burning anger was unravelling from within like a giant python releasing its suffocating grip. I began to shake, lightly at first but then violently until my legs stopped working and I had to grab onto the back of a park bench, gripping with all my strength to steady my hands.

I gritted my teeth at the momentary pain and felt tears form in my eyes. I turned to hide my face from those hurrying by me on the sidewalk.

"Probably the wind," I told myself.

I stood up straight as the shaking eased and stared out to the grass, yet green, around a little baseball diamond, and thought of the young Stanford quarterback, Andrew Luck.

"I hope you take the Heisman, Luck!" I said out loud, though there was no one to hear me.

Dr. Margaret Flowers Confronts Wall Street Investors Trying to Profit from Health Care | Truthout

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Waiting For That Other Shoe...

When I was told I had cancer life froze in that moment. My face set in a polite smile and my eyes focused on the neatly knotted, blue, bow tie with tiny, red polka dots worn by the bright young Doctor as he spoke the words in measured tone.

"I'm not sure what they told you after the surgery, [to remove a tumor, plasmacytoma, from my chest], but you do have cancer."

The doctor and nurses who sat with me that morning, seemed impressed at my unshaken composure.  Then again, they had witnessed this act before.

Hearing the news was a body blow, like receiving a concussion without losing consciousness. I knew what the words meant: "multiple myeloma; blood cancer; extending survival rates; pray for remission; there is no cure".

Riding through a high tech car wash recently, reminded me of that day.  A violent storm driving water, chemicals, huge brushes and jet engine like fans, beating hell on the car's exterior as I floated through in the dry, quiet solitude within. 

The incremental progression of MM is unsatisfying. Is that the word? We know that MM progresses inevitably to death, but with unpredictable pacing. Unpredictable sounds strange I'm sure to the uninitiated but it feels right to me. The old stats had the average survival rate at five years. Actually, that may have been the median rate rather than the mean, but either way, new protocols and combination drug therapies have moved the numbers up the curve.

I use the word unsatisfying because the disease bursts like a surprise tornado into furious activity, requiring massive retaliation by the oncology team, and then goes quiet.  In my case, a plasmacytoma (tumor) was removed from my chest in January of 2003, followed by six weeks of radiation in April. Five months later I was well enough that I rode my new Lemond Road bike in the 192 mile Pan Mass Challenge.

 I have ridden four or five times since, in between ambushes by the MM cells that hide like bandits in tiny ravines, and dead end canyons throughout my bone marrow.

The late Reverend Peter Gomes said,"Faith is the conviction that hope works."I have faith that if I and 'my' oncology team could get one-on-one with this beast, we would win. Instead we go from skirmish to skirmish, fighting against a guerrilla force that chooses the time, place and virulence that satisfies its design.

 So I vent.  Yet, on each monthly clinic visit, or when visiting sites like "MM for Dummies," I see and read of others dealing with serious ramifications of a more violent class of MM. In particular, the growing number of young people fighting this cancer, once nearly exclusively a disease of the elderly.

I'm thankful that I am relatively active at 62 and grateful for the dynamic brilliance of the Dana Farber Oncology folks who have succeeded time and again in driving my disease into dormancy.  My admiration and respect for fellow travelers, especially the young, like Paula the knitter and Phil the kicker, who live with much more courage than should be required at their ages, knows no bounds.

Again, I apologize for venting when I have much to be grateful for. Still, I can't help but pray for that other shoe to drop so I can take this fight to the final decision, one way or another. 

Geraldine Ferraro - Warrior Princess

It remains striking to recall, (despite lacking the technological advancements that allow today's spin masters to penetrate all levels of public attention like a deadly virus through a semipermeable membrane), the agility of the monstrous political spin machine, reversing field and cutting back to focus its death rays on the first female interloper in the exclusively male preserve of presidential politics. It's clear that Geraldine Ferraro anticipated major opposition to her historic nomination as the first woman vice presidential candidate and running mate of Walter Mondale in 1984. What she got was a massive retaliatory strike by the opposition and the flaccid support of the Democratic Party, weak kneed at the prospect of fundamental change.

Ms. Ferraro faced challenges from the start, being raised by a single mom after her father's death, but attained the highest levels of success by virtue of her intelligence, perseverance, generosity and optimism. When multiple myeloma crashed into her world in 1998, that too she wrestled to the ground and on a daily basis fought it to a draw, absorbing the physical pain, the fearful psychological trauma, refusing to allow the deadly disease to alter the purpose of her life.

I was diagnosed with multiple myeloma in 2002 and I owe my extra years of continued good health to the Doctors and Nurses and Researchers of the Dana Farber Cancer Institute in Boston. But the spirit to stand tall and ferociously fight through, over, and around the black beast of cancer, to focus on the bright colors, the overwhelming beauty and joy of life was a gift from Geraldine Ferraro.

I am stunned at the loss of this bright light. Geraldine Ferraro rode stoically at the front blazing a path that many of us followed and as I continue across the treacherous fields, slowing to honor her still form, wanting to stop, to stay and draw strength from her resting soul, I stumble in sadness at the loss of this grand woman.

Story Two: "A Day....."    (For my Ali)

He leaned back against the car and savored a moment of peace as the dawn light burned through the mist revealing a clear, blue, summer sky. Sun splashed across the yard and the dew settled like a blanket of tiny diamonds over the striving grass.

How could it be?

The little family had been up for some time, bathed, dressed and ready for the two hour drive into Boston’s Dana Farber Cancer Institute. Seven year old Eleanor wrapped in her toastiest blanket, sat on the big leather reading chair in the den and looked up from her book as her Dad stepped through the door from the driveway.

A shiver coursed through his body, anticipating the day ahead.

“Is it cold out Dad”?

“A little cool for August, Eleanor…. but I’m warming the car”.

He knelt before his little girl and tucked the blanket close around her thinning frame, leaning in to kiss the translucent skin on the top of her head.

“Eleanor”.

Her Mom smiling hard quick stepped from the kitchen, a glass of orange juice in one hand and a blue beret in the other.

“I brushed off your hat in case you want to wear it into Boston this morning."

“Dad, will you hold my book?”

Eleanor handed him a paperback with a dog on the cover, and reached for the hat in her Mom’s outstretched hand.

Mom always asked, but Eleanor wore the little blue hat all the time now, indoors and out. This time she was more aware of the staring faces.

She was four when she first endured the effects of chemotherapy. Then, as her long, dark curls fell away she was more curious than concerned, believing, as Mom explained, - the medicine made her hair fall out but it would grow back just as full and long when she was better.. - Until it grew back she was so busy with friends, and grandparents and cousins visiting that she didn’t think much about it.

This time, almost four years later, she went back to school suddenly bald and the way the kids stared made her feel lonely. In the mirror that night she studied the fine, blue veins marking the top of her head like the lines on the classroom wall map and decided right there she would never again leave home without her hat..

Eleanor woke easily to her Mom’s voice whispering, “We’re here Sweetie. Dad’s going to help us from the car.”

She was warm, she realized, except for her hands, which never felt warm anymore. Her eyes came into focus as she became aware that she had been wrapped like a cocoon in her favorite quilt. She had barely moved from the time they pulled out of the driveway at home.

Dad leaned into the rear passenger door, smiling at her attempt to look wide awake. He lifted her easily from her Mom’s lap and held her while Mom wearily exited the back seat and gathered a bag of games, books, her pink I Pod, and a small overnight satchel just in case.

At the entrance they paused before the tall windows, Eleanor still in her Dad’s arms her Mom laden with bags, spectators themselves for a moment. They watched as Nurses and Doctors moved deliberately, crisscrossing the lobby, in and around the kids being wheeled or carried by anxiously determined Moms and Dads. Nobody stared, nor did they avoid eye contact. A touch of a smile or a slight nod, the only signs of the unspoken sharing that occurred in this place.

Finally,with a collective breath and looking straight ahead, they went through the big doors to join the marathon within. Here, at least, there was hope.